Autism Speaks?

Since Jonah's autism diagnosis at age 2, in 2010, we have looked to the organization Autism Speaks for help and inspiration.  We formed our team, Team Wonderboy, walked the walk, and have raised thousands of dollars for them.  I have supported them because of their dedication to real science and research, their refusal to give in to the hocus-pocus nonsense that is the anti-vaccine movement.  I have supported them because of their inclusion of Aspie hero John Elder Robison on their board.  His book Look Me In The Eye was the first I read (with one eye open, hiding under the covers), when I was terrified of the diagnosis I knew was coming for my son, and it blew my mind wide open about what was possible for my child. Last week, after a hugely controversial statement by Autism Speaks co-founder Suzanne Wright was released, Mr. Robison resigned. You can read his statement here.

The problem, in a nutshell, is this:

"These families are not living.
They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely - 24/7.
This is autism.
Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.
This is autism."

Nope.

Let me be clear: I fully realize that, in the scope of autism spectrum disorders,  we have been extremely fortunate.  Our child is considered to be "high functioning", attends kindergarten in a mainstream class with his twin sister, is bright and is expected to do well academically.  He has some behavioral issues, some delays with speech and fine/gross motor skills, but has responded well to all therapies we've tried so far, and is working his little heart out to close those gaps.  I certainly worry about him, but fear and despair are not a part of our daily life.  At all.  And while I know that there are families facing much greater challenges because of ASD, there are quite a lot of families like mine (not to mention autistic adults) who find this kind of fear mongering offensive, inappropriate, and counter-productive.  What can we hope to accomplish with such negativity?

While I'm deeply curious to find out (hopefully in my lifetime) what has caused this increase in diagnoses, I'm glad that there is also significant focus on therapies and resources.  Given my background in the sciences, my faith is in quality research to provide the answers we need.  That said, I'm not at all sure I want to "cure" my son of anything.  I worry that the difficulties that make our daily life a little more challenging might be a cause of some future unhappiness for Jonah, but I can't imagine wanting to change such an essential part of who he is.  Because he is extraordinary. 

Autism Speaks is the most widely recognized organization for autism spectrum disorders.  They have funded (and continue to fund) important, desperately needed studies, they provide resources for affected families, and without a doubt, autism awareness has increased significantly due to their efforts.  For my part, I'm going to hang on to my fundraising dollars for now, and wait it out.  I'd like to give them the chance to amend their statement, to step back and realize that they have alienated so many of their supporters, and that we need a positive focus, moving forward.  Other charitable organizations have faced similar controversy (Komen comes to mind), so I hesitate to throw out the baby with the bathwater.  If you have donated money to our team, to Autism Speaks, I feel confident that our money did not go to waste.  One statement cannot discount all the good that has been done.  We've had a very positive relationship with the local Autism Speaks chapter, with the walks, and as a representative family for Autism Awareness Month in our town, and I'm hopeful that we can continue that relationship in the future.  We'll just have to see what's going to be best for us, moving forward, and you can be sure that I'll keep you posted.

Regardless, our spectacular boy remains, as ever, Captain of Team Wonderboy.

His Life in Pictures

As you know, Jonah is enamored of technology of any kind, and Apple products in particular.  We are torn between encouraging and limiting his enthusiasm, because, you know, a full scholarship to MIT might come in handy, but we don't want his face in a screen all day.   Several months ago, he discovered the camera function on my phone, which meant that he was always running around with it, snapping pictures, and using up all of my available space.  I just sighed and set about deleting the hundreds of photos he had taken, before some small part of my brain said, "Wait.  Are you really going to miss this chance to see what he sees?  How he sees?" And then I started to really look at what he chose to photograph, and how, and it wasn't random at all.  He carefully selected what he wanted, and took time arranging it just so.  Please note that these were taken by a four-year-old on my crappy iphone 3, so the quality isn't terrific- the content is what I'm interested in.
Several common themes emerged:
Texture:

  Light:

Fingers and Toes:

 

 

Technology:

Motion (and these were done deliberately, often taking several trials):

Object Stills:

Noticeably absent are photos of people, of faces.  Of the hundreds of pictures he has taken, only a very few include people.  And who knows what any of this means?  Does he see in pictures, as Temple Grandin explained, and photography is a way to slow the stream of images he sees?  Is the camera a way to distance himself socially?  Whatever Jonah's reason for taking these pictures may be, I'm so grateful for the glimpse inside of his quick and quirky mind.  He can't always tell me what he's thinking, but maybe he can show me.